Hello

Fiasco
Fiasco Member Posts: 12 Member
in Head and Neck Cancer #1

IS anybody there?? Or is this another waste of time?

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #2

    I answered you twice on this thread please check it out.

    https://csn.cancer.org/discussion/comment/1716038#Comment_1716038

    And if you have any other questions please post them or private message me and I will help you as best I can.

    Take Care, God Bless

    Russ

  • Jkchapa79
    Jkchapa79 Member Posts: 5 *
    #3

    I guess the answer to your question is what are you looking for? What is it that you need? How can we support you?

  • kinji
    kinji Member Posts: 11 Member
    #4

    If this forum seems quiet there are other resources you can add.

    you can check out reddit.

    There is a head & neck cancer group on there. They actually have this group linked in their resources.

    r/headandneckcancer

  • kinji
    kinji Member Posts: 11 Member
    #5

    They have links to about every resource there is. Webwhispers, Young Tongues, The Oral Cancer Foundation, you name it. They also have a Discord server and a wiki they add to with frequently asked questions. I found it was nice to have as many resources as I could find. It's very active with a lot of people giving people tips and support.

    You will want to make sure to read the rules there. They don't allow people to post asking questions about symptoms or posting photos asking people if it looks like cancer. However, they are very supportive if you've been diagnosed or if you are a caregiver.

    As I said, they do have a link to this forum as well.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #6

    Thank you very much kinji I am sure your advice will be very helpful to folks on this forum to reach out and use other resources, we need all the help we can get.

    Take Care, God Bless,

    Russ

  • Fiasco
    Fiasco Member Posts: 12 Member
    #7

    THank u Kinji and Russ. After 3 treatments My actinic keratosis on my lip is almost gone but not completely gone yet. I will be traveling to the doctor that removed the basal cell cancer on my nose next week. I also had another suspicious spot on my scalp but the biopsy came back as benign so I am doing ok, but It is still really challenging to find good doctors. My local doctor has cut her practice to 3 half days per week but at least she is still here. I do wish I knew where it is easier to find good doctors if there is such a place.

  • kinji
    kinji Member Posts: 11 Member
    edited September 25 #8
    https://csn.cancer.org/discussion/comment/1717917#Comment_1717917

    You are most welcome. They do speak about hospitals and certain surgeons and doctors in that community on reddit as well.

    For example, there is one surgeon that is very good at performing neck dissections without causing nerve damage. The Cleveland Clinic is one the most highly rated with surgeons for problems with Osteoradionecrosis of the mandible and jaw.

    I was speaking with a man yesterday actually that had tonsil surgery and he's in treatment for radiation now, and still eating by mouth. He is doing VERY well. He's 47. The surgery for these issues is just getting better. He's never had a cavity and never had to have any teeth removed. He's at week 3, still eating solids. He thinks he's an Ostrich.

    Age may have to do with it. But treatment and surgery are getting better. People need to have some hope and not be petrified of the treatment to the point of turning it down.

    I recall reading so many horror stories, but we are all different and don't all have the same treatment regimen. I was petrified and broke down in the hospital telling them I rather die than go through the treatment I had heard of. Seriously. My doctor was right, I shouldn't have researched online like I did.

    We are honest over on the subreddit, but not all treatment is barbaric.

    One horrible thing now is the opiate issue, though.

    Keep a positive attitude. It never hurts. Don't go in after reading how many people you've followed and died 5 years later from stage 1 or 2, or recurrences. It messes you up emotionally.

    Go where you can get tips, positivity and a supportive group that will answer your concerns the entire step of the way so you don't feel alone, like I did. Wherever you feel safe, hold on to that.

    Good luck and good vibes,

    -KK

     

  • SuzJ
    SuzJ Member Posts: 446 Member
    #9

    I refused a feeding tube 4 or 5 times :)

    Just couldn't do it. I had made chicken soup beforehand, but my portion size was way off, one mug was 2 or 3 meals. I know it was good, and there was nothing that would hurt me, like tomatoes.

    Bland soups went down well, when it got hard they got whizzed to pulp. Boost - strawberry was my go to.

    I found my sense of smell got crazy strong, big time.

    Don't ask Dr Google...

  • kinji
    kinji Member Posts: 11 Member
    edited September 26 #10
    https://csn.cancer.org/discussion/comment/1718158#Comment_1718158

    I never recommended to ask Dr. Google. I never did, but I ended up in a place with a lot of negativity after I was diagnosed.

    I was also able to swallow the entire time I went through radiation. It wasn't pleasant and I had to take a pain med an hour prior, but I did it.

    It happens.

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